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Hello and welcome to this monthly summary of my community research, the fifth so far. This month there is a new publication of findings online for you, plus the usual updates. The over-arching theme of Independent Living campaigns continues.

I could write at length about the current pandemic in England and the government’s appalling policies and practices, but in a nutshell I am following the grown-ups in Scotland for the time being. If the English government’s health policy was herd immunity, it changed some time ago to become the herd graveyard. Breath-taking incompetence.

1. 2020 – Independent Living and Covid-19

Previously I’ve been looking here at the number of deaths of people living in care comes compared with people living in the community, and my strong conclusion continues that Independent Living saves lives.

However, let’s not be naive and think that numbers alone will persuade the various vested interests that the game is up on profits and segregated institutions. This blog is my summary of what I think the coming battle for social care might well look like.

2. 1970 – Alf Morris 50th anniversary

In February I circulated some draft Research Notes for comment on the campaign by disabled people and allies in the 1960s which led to Alf Morris writing the Chronically Sick and Disabled Persons Act 1970 (CSDPA). Thanks for comments and the final version is here (pdf).

For every social services department, the 1970s was the first time they made contact with many disabled people, and that was because of this new law. Books have been written on the years after the CSDPA, but very little has yet been researched or written about the years beforehand, and only one (an autobiography) on the campaigns by disabled people to live independently with support. This is even though disabled people’s campaign for independent living featured in a mini-series on BBC2 television in 1968 (page 16 in the pdf link above).

3. 1995 – DDA 25th anniversary and DAN demos

The news embargo has been lifted on a forthcoming docu-drama being made for BBC2 this year on the Disabled People’s Direct Action Network (DAN) and the campaigns in the early 1990s for civil rights leading to the (flawed) Disability Discrimination Act 1995 (DDA). The GMCDP Archive has an extensive set of papers and objects in its DAN Collection, and we’ve been told the collection is providing useful research material for the writers of the programme. Details on the BBC Media Centre here.

4. GMCDP Archive

I’ve been listing the names of the various collections within the archive in recent bulletins, and some new ones that are waiting to join. These collections have been generously donated by disabled people’s organisations and by individual disabled people from the campaigns they have been involved in over the years. A recent assessment of the archive noted that it is now “130 linear metres,” or 14 double-decker buses long as a colleague helpfully calculated. With the pandemic lockdown the archive development can only be home-based at the moment, and we are hopeful of announcing more developments soon.

If Engels was living today he would be visiting care homes in Manchester, not factories.

In the Covid-19 pandemic more people have died in care homes than in hospitals, with current estimates north of 22,000 fatalities in care homes in the UK. This awful reality is being seen in Canada, USA, Spain, Sweden and across the western world. Further casualties must be expected. Social care is not just about elderly people in care homes, millions of people are living in their own flats and houses with support and 1 in 6 residents living in care homes is of working age. But care homes for elderly people are now the battle ground.

Care homes rely on low pay, zero-hours and migrant labour. They were financially unsustainable even before Covid-19, and the pandemic has broken the model wide open. A battle is starting for the new normal in social care and the defenders of care homes are lining up for the fight. As in a medieval campaign so far we can see four camps limbering up. For convenience we can call these camps the Corporatist, the Capitalist, the Collectivist and the Community. So let’s examine their battle plans in turn.

The Corporatist camp believes that good practices will prevail, and that better regulations and smarter procurement will provide the answers. It especially likes non profit providers such as the big charities and social landlords because they talk the same language. The generals in the camp are the Care Quality Commission and Public Health England, with their local lieutenants in the new Clinical Commissioning Groups. Their two weaknesses are their stores are empty and they don’t know when they have been out-manoeuvred.

The Capitalist camp believes that their ruthlessness (which in public they call innovation) will see off all other options. This camp has the best supply lines; donors with large levers inside government, thinktanks, and some media. The property bubble has given them superprofits by signing offshore mortgages and putting the winnings in a different company, leaving the care home accounts looking bleak, leading to more excuses for even less pay and worse job security. The big reductions in overnight wages is a recent example. Their weakness is they can’t help attacking each other, even though they pay lobbyists to say they have a united front and a common interest in serving humanity.

The Collectivist camp is newer. They believe that care homes as a business model are fine, it’s just the bosses that need fixing. Their generals include the TUC and the We Own It campaign, and their battle plan is to nationalise care homes as a sister arm to the NHS. Their battle cry is for a new National Care Service. This campaign has some merit, social care has always been the poor relation of the NHS. The mass eviction of tens of thousands of delayed discharge hospital patients (bed blockers as the troops would say) despite many being Covid-19 infectious will haunt many decent people in the NHS. The suspension of the Care Act and subsequent wholesale evictions from hospital wards showed what community care means inside the NHS when push comes to shove. The weaknesses of the collectivist camp are that they see care homes as an industry, and they underestimate the power of the big hospital barons to suck the money out of community care. To be fair, others make the same mistake.

Finally, away in the far corner is the Community camp, the smallest band of fighters. They aren’t new to the battle, they’ve been skirmishing in the shadows of policy since the 1960s and maybe earlier, with groups such as the National Campaign for the Young Chronic Sick which helped the Labour party pass a law in 1970 to liberate disabled people from a lifetime spent in a hospital bed to live independently by taking responsibilities away from the NHS and giving them to councils with social services departments. The 1970s and 1980s saw more campaigns against segregated care institutions, and the idea of independent living with support in the community started to take hold. Scores of disabled people visited Berkeley in California to learn how disabled people there passed on their knowledge to the next generation through centres for independent living. The campaign for independent living rumbles on, and the generals in this camp include the Reclaiming Our Future Alliance and Disabled People Against Cuts. Their weakness is that ten years of austerity, and marginal funding for years before that, has left their organisations empty or gone.

So, which of the Corporatist, Capitalist, Collectivist and Community campaigns will prevail in the coming battle for the new normal in social care?

We know that independent living has saved lives when compared with care homes. Given the international crisis in social care, the leadership failures in many western governments, and in response the rise of localism and mutuality as the most resilient response, it’s too soon to write off the community campaign for independent living.

I believe that many disabled people’s organisations (DPOs) in Greater Manchester would benefit from coming together by having a hub again for offices and meetings. The previous hub was closed seven years ago by austerity cuts.

Eight months ago I wrote about the need and benefits of a new hub – the link is below.

So it might seem odd during the covid-19 pandemic to be thinking now about being close together again. DPOs are campaigning hard on the appalling number of deaths in care homes, and on the lack of emergency support for disabled people who are shielding or isolating during the lockdown.

But I think we also need to put a marker down, to demand a say on the social designs of the future that are being started now, the “new normal”.

After the previous hub was closed in the years of austerity, many DPOs have been using offices which are much smaller than before, cramped, and dispersed, and often less accessible.

What if the “new normal” says that people who are younger and non-disabled can happily move about, socialise, go out to events, but the “vulnerable” will have to stay indoors and keep using zoom. And DPOs as responsible employers will be rightly worried about the thought of staff teams being asked to return to their small offices.

So some new thinking is required.

Firstly, a covid-19 vaccine is not certain, and if possible it will take many months to develop, and no-one can say yet how long it would stay effective for. There are other coronaviruses in nature where no vaccine for humans has ever been made despite many years of effort. And secondly, many people now agree that we need to redesign our new social arrangements to make us more pandemic-resilient against any future plagues that will come our way. There is good scientific research on the increasing interactions between humans and wildlife which is accelerating the movement of viruses between species.

So what might a pandemic-resilient new hub for DPOs look like?

My early guess is that it will be flexible, but not open plan. Given the circulation space needed for disabled people who are wheelchair users, this means larger offices which are not over-occupied by people or furniture. The previous hub had some of this, partly by accident because it was a retrofit of an institution which typically has larger rooms.

The new hub will also need to have a range of good transport connections, so probably near but not in the middle of a city or town, with significant parking for disabled drivers, with good public transport links (trams, buses, trains), easily walkable and with safe cycling routes. These are all general desirable features, so it means looking for a hub design or location that might also attractive to other organisations with more clout – and not accepting the cast-off options.

In design terms, the hardest element of a new hub would be the meeting spaces within it. A core feature of the previous hub, as well as the synergies of many DPOs sharing the same place and all the conversations and joint working that resulted, was it’s ability to hold large meetings of disabled people without rubbish access. The parking was sufficient, the circulation space was (mostly) flexible, the necessary tech was built in, and the toilets were many and dispersed. Perhaps most importantly, the hub tenants were very skilled and knew how to run an accessible large meeting.

No-one yet has a blueprint for all of these requirements, but I feel the debate needs to start before DPOs are given “the answer” without even getting a chance to ask the question, what do we need now?

With deaths from the covid-19 pandemic raging through care homes in the UK currently, the focus of this bulletin is on research and history building on Independent Living (IL) and on radical Centres for Independent Living (CILs).

I believe the inevitable public inquiry will starkly show that many disabled people living independently in the community survived while their disabled comrades in care homes died.

Many people have emphasised how disabled people are being ‘othered’ in media and government messages once more as vulnerable people. But the lethal contrast between living independently and being an inmate in a care home shows how that deadly vulnerability comes from society, not from the person.

2. 1970 – Alf Morris anniversary

The current plans for celebrating the 50th anniversary of the Chronically Sick and Disabled Persons Act 1970 are some online events in September. Campaigns by disabled people in the 1960s have been outlined in recent bulletins.

A contemporary Labour Party MP of Alf Morris was David Owen. They both went to the House of Lords after being MPs. A recent email from Lord Owen has added the following context to the campaigns by disabled people at the time:

“… commenting on your paper and the National Campaign for the Young Chronic Sick. I knew its chairman, Marsh Dixon, because if my memory serves me right we were both members of the Chelsea Labour Party when I lived on a houseboat off Cheyne Walk from 1960-64. He was the power behind the Campaign. I think it was a few years later that Alf took up the cause. Also Jack Ashley.

I was due to present a Private Members’ Bill to the House of Commons when I was appointed Minister for the Navy in July 1968 and I passed the Bill on to Jack Ashley to present in the Commons and it was his first speech after having [become profoundly] deaf due to a viral infection. I was there to listen to him and Alf almost lay on the bench in front of Jack putting his index finger and thumb up in the air moving apart to indicate to Jack whether to be louder or quieter. It was quite a performance from both of them.” Lord David Owen, email, 27 April 2020.

3. GMCDP Archive

Last month I started a list of the collections in the GMCDP Archive, and the list below starts to add some dates for what’s within these collections:

In April the Lorraine Gradwell collection started to be formally assembled and so far it consists of around 400 items in 14 storage boxes from being a teenager in 1971 onwards, and catalogued. There is more to be done yet, but the progress is encouraging.

In 1993 GMCDP produced a booklet on the NHS and Community Care Act 1990, calling for better implementation of community care and independent living, and providing advice on how to challenge poor practice by official bodies. I scanned a copy of this booklet and circulated it in social media, especially because of its relevance now with the so-called easements of the Care Act. Link here:

One disabled person reading the April Bulletin got in touch to recommend a book they had read in their youth. ‘The Empty Hours’ radicalised their politics, they said, especially on avoiding going into an institution with every resistance they could muster.

The Empty Hours: the weekend life of handicapped children in institutions by Maureen Oswin (1971, Pelican books)

Well, one month on from the previous Bulletin and the world has changed completely. But at the end of it, we will still need radical research to guide better policy and practice.

I suppose the first point to make is that research itself (at least that based at universities) is suddenly in a place of massive uncertainty. The commercialised business model of higher education in the UK, underpinned by fees from overseas students, has collapsed, and even if there is a bail-out financially I don’t think anyone yet knows what the sustainable future of research within higher education will look like. Only today (10 April) the Universities UK umbrella body was asking the government for a two-billion pounds bailout.

Now, on to the usual practicalities.

1. 1960s. The 50th anniversary events by Manchester Histories of Alf Morris (MP and then Lord) and his landmark Act of Parliament, the Chronically Sick and Disabled Persons Act 1970, have been put back from June, pencilled in currently for September. As part of this theme, my research into the campaigns by disabled people and allies in the 1960s moved on a step in March when I visited the British Library in London and found a copy of the letter in the New Statesman political journal in 1966 by Marsh Dickson which got Pamela La Fane first involved in the National Campaign for the Young Chronic Sick, which fed into Alf Morris’ law.

2. 1920s. The 100th anniversary of the National League of the Blind (“and Disabled” was added later) of their march to London for employments rights was on Sunday 5 April. A replica banner has been made (credit: Jenny Gradwell) and the plan was to congregate in Stevenson Square in Manchester and then in Leeds. Of course, that plan was abandoned, and social media posts were used to celebrate the anniversary instead.

3. 1980s onwards. Some elements of this are still confidential, but the GMCDP Archive work is moving forward slowly despite the current crisis. A recent independent professional assessment of its contents noted that, if all the boxes of papers and such were put on one shelf it would have to be 130 metres long. That’s longer than a double tram. I think this alone gives a sense of its significance and potential for learning by activists and by policy makers and influencers.

For me a key recommendation in the assessment report is that this archive is actually an important series of collections. I’ve started an (incomplete) list of these collections here. Please note that some are still works in progress.

* British Council of Organisations of Disabled People BCODP
* Disabled People’s Direct Action Network DAN
* Disabled Women in London
* Greater London Action on Disability GLAD
* Greater Manchester Coalition of Disabled People GMCDP
* Manchester Disabled Athletes Collection
* Muscle Power
* National Centre for Independent Living NCIL
* National Organisation of Disabled Lesbians and Gay Men
* Research Publications Section
* Union of the Physically Impaired Against Segregation UPIAS

4. 1990s. In late February I joined an informal lunch-meeting in London with some DAN alumni and a TV production company which is looking to make a docu-drama programme on DAN in the early 1990s and the campaign for civil rights. Of course, since then the production is on hold for the moment along with many other non-essential tasks in a time of covid.

5. 1970s onwards. One of the poignant effects of lockdown is that I plan to spend more time at home cataloguing the Lorraine Gradwell Collection, which is currently eight boxes and likely to grow. I’m hoping the catalogue (spreadsheet) will conform with the national standards, and will be checking out drafts with colleagues.

Finally, the other items from the February and March Bulletins are ticking over in the background.

The UN has estimated that 195 million jobs will be lost by the covid pandemic. A recent survey by the UK’s Creative Industries Federation (interest declared) has shown that 42% of creative businesses have already lost 100% of their income.

In thinking about what next, there are the immediate responses by various governments to protect incomes, housing and food. Often flawed and with big gaps, but also temporary. What might come afterwards? To use the phrase, what will be the new-normal?

Some suggestions

1. Re-booting

All the talk of business scale-up and growth will now feel very dated. I think we’ll be dusting down our start-up resources, not least because even when the same people in the same company try to continue with the same work with the same clients … the reality will be that it will be start-up tools and methods that will be needed, but maybe called re-booting to acknowledge the natural human desire for continuity.

2. Cooperation

It tells you just how much of a crisis the world is facing when a UK Conservative government gives press conferences with phrases such as “working with our friends in the trade unions”. Of course they are right to do so, but just check how far we have already changed. The common cause and grassroots volunteering will not just fade away, and I guess I want to believe that at least some of this new co-operation will endure. Consider, for example, a so-called blockbuster movie. Traditionally the investors would work with producers for a return on investment (profit, or sometimes loss) and the staff would be hired and fired as needed. In the make-up department they are called ‘dailies’. But imagine everyone works with co-op contracts, a living wage at the time plus a % of future income. And investors get a fair return, not super-profits. Of course, many creative projects do struggle to get funding as a rule, and to cover costs, but that doesn’t mean that a fairer, cooperative model isn’t possible.

3. Innovation

I worry that the public sector – the world of local authorities, LEPs, DCMS, etc etc – and its orbiting moons such as BFI, Arts Council, National Lottery – will find it hardest to adapt to the new world we find ourselves in.

The public sector staff culture might be something like saying, “well, we’ve done a lot of working from home, and put some new apps on our phones, but now it is back to the office, the 7.27 train, and making more spreadsheets on the server for clients to fill in”.

Whereas creatives in the private and independent sectors will probably be saying, basically, “You know what, that office was mostly a waste of money anyway, let’s spend the rent instead on a summer camp and bring the kids and elders along” or whatever.

In short, I think there is a risk that the next innovations will act as a cultural wedge where the public sector risks being stuck in the past. But possibly some public sector leaders will start to look beyond the old model of command and control, centralisation, outsourcing essential services, and unsustainable pay differentials.

And if innovation means we’ll never have to hear again about KPI seminars, well friends, wouldn’t that be something!

Reducing stress is maybe hardest at the moment, and we all have a responsibility for others as well as ourselves.

– limit how much news you read and watch
– take responsibility for not stressing others
– show acts of kindness and generosity
– accept that things are changing now
– find moments of serenity despite the new.